Duluth-based Essentia Health, state Sen. David Tomassoni join national ALS trial

DULUTH — Duluth-based Essentia Health plans to join a national amyotrophic lateral sclerosis trial, allowing the health care organization its first chance to offer ALS patients possible breakthrough treatments.

Longtime state Sen. David Tomassoni, DFL-Chisholm, is one of those patients, he said during a Wednesday news conference held by Never Surrender, a Duluth-based nonprofit that raises money for ALS research.

Essentia has a treatment center recognized by the national ALS Association, but it hasn't been able to offer patients the opportunity to participate in research, said Dr. Amber Erickson, a neurologist for Essentia's Duluth Clinic.

"Being on the receiving end of an ALS diagnosis is unimaginably difficult," she said, because patients are told that while treatment might slow progression, the disease is "100% fatal."

To be able to offer patients trial participation is "amazing to us," Erickson said.

ALS, commonly known as Lou Gehrig's disease, is an incurable and progressive neurological disease that leads to loss of muscle control. The Healey ALS Platform Trial is evaluating multiple treatments simultaneously, said Dr. Merit Cudkowicz of Massachusetts General Hospital, principal investigator of the trial.

This kind of simultaneous trial is an approach that's worked with breast cancer, Cudkowicz said, and offers a faster way to test drugs.

Tomassoni, a longtime Iron Range legislator first elected in 1992, announced his diagnosis over the summer. His son, Dante Tomassoni, read aloud Wednesday a statement from his father, who was present on the call. He joined the trial in November, he said.

"In September of 2021, I was still able to drive a car, dress myself and feed myself," he said. "Today, due to the progression of the disease, I am not able to do any of those. I need a caretaker to get me through the day. … I hope that my participation in the study will in some small way contribute to the discovery of new treatments for ALS and afflicted people. For too long there has been little or no progress in delaying the progression of this disease. Giving people the chance to have good quality of life while having ALS is paramount."

Never Surrender, which holds two major ALS fundraisers including next week's Black Woods Blizzard Tour, has contributed to the trial. In 2021 it raised more than $1.5 million for research and patient care.